A Parent’s Worry Explored in NBC’s ‘Parenthood’

The Bravermans are having a baby! How exciting! From the look on Adam’s face in the final episode last spring, it was a real shock to both Adam and Kristina at first. Now they, as well as the whole Braverman family, are delirious with joy that Kristina will be having a baby – and soon! But underneath, there is tension and, like many families in similar situations, real fear as well.

Kristina and Adam know the statistics for having a second child with an autism spectrum disorder. The latest research study (Ozonoff, Young, et al., 2011) released just this August in the journal Pediatrics reveals that the chance of having a second child with an autism spectrum disorder is 19% (previous rates were stated between 3% – 10%). Since four out of five individuals with autism will be boys, is it any wonder that Adam and Kristina are hoping for a girl?

Learning that they are having a baby girl lessens the tension but probably will not totally eliminate it. The research in heritability of autism in families is difficult to ignore, and Kristina and Adam face what other families face when they already have a child with autism spectrum disorder. Some families that have a diagnosed child with ASD will choose not to have a second child at all – in research, that’s called the “stop factor.” To put it plainly, they stop having children.

And that is sad. Because each child – whether they have autism or not, and whether they are the first, second, third or more child with an ASD – should be a joy to behold. For families that have a child with autism, the family gets an extra package – a child that has a very unique way of looking at and reacting to the world. Individuals with ASD offer so much to our world – to parents and professionals alike. Too often, the world only sees the “downside” to autism: the lack of verbal language, the inappropriate behaviors, the social isolation. Professionals (like myself) hold days-long workshops on ASD, outlining the characteristics, teaching strategies and methods to reshape inappropriate behaviors, and how to ameliorate the symptoms of autism. But shouldn’t we be holding days-long workshops on what those with autism bring to our society? The joy of seeing progress, the huge rote memory, the insatiable curiosity, and the pure innocence that catches us unaware and makes us all humble?

Yes, it is a present fear that a family will have a second or third or fourth child with autism (and there are some families in this nation that have more than four children with ASD), and pediatricians and family physicians should be referring the family for genetic testing and counseling, so that the parents can make informed decisions for themselves and for their family. Although there is no definitive genetic marker for autism at this time, current studies are getting closer to capturing its elusive causes. Someday, there will be answers. Families who have a child with ASD (regardless of how many) should be referred for genetic testing, since other, underlying conditions can be identified (which may explain behavior and medical difficulties mimicking autistic behaviors) such as Fragile X, metabolic disorders, Rett’s Disorder, etc. In fact, genetic testing is a procedure that families may want to repeat every 10 years or so, since breakthroughs can happen (and are happening) at any time and in any number of disabilities and conditions.

Should Adam and Kristina be fearful? Not really; the baby is coming regardless of whether she has autism or not. A bit worried? Yes, probably, and totally understandably. But this is a strong family, and the love of their children is deep; they will love this little girl whether she has an autism spectrum disorder or not.

And she couldn’t be born into a better family.

Written by Sheila Wagner, M.Ed.

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The High Risk Baby Siblings Research Consortium—in partnership with Eunice Kennedy Shriver National Institute for Child Health Development announced the results of the consortium’s largest ever siblings study. The researchers followed younger brothers and sisters from infancy through the preschool period, when autism diagnosis becomes possible. The study revealed a markedly higher risk among younger siblings than had been previously reported.

I stopped reading at “the joy to behold” and “family gets an extra package”. Either this was written by someone without autistic children or those on another area of the spectrum than mine. I now have 2 girls with autism. It’s insulting to blanket statement that I and other mothers should have additional children despite the continues risk.
My story…we have NO family support because both sets are fearful and ignorant of our children’s needs. They saw Rainman, think they get it, and they’re terrified. They don’t see my 8 year old daughter cry and beg me to find her friends. They don’t see her face as she’s in hours of therapy while our neighbors kids run back and forth past the window. They don’t hear my 2 year old crying from the cramps in her legs from all the toe-walking, despite my attempts at stretching and massage. My kids are in pain. Why would I subject additional children to that? It would be selfish of ME to do so. The above blog disregards the REAL pain and process behind autism. I wouldn’t trade my kids for anything. I would trade everything for them to be functional and HAPPY,

How very unfortunate that you see your children this way. I am truly sorry that you and your daughters are having a hard time. My daughters have the same issues with friends. I can relate. I have two daughters that have mild ASD. I feel they are the most interesting and fascinating people in my life and they are smart and talented and not one bit like rain man. I would have more kids in a heartbeat ASD or not!

hence MILD…who are you to judge how she feels? You don’t know what she has been through in HER situation. She blatantly states she loves her girls and would not trade them but to bring an “additional” child into the situation with the same risks is selfish of her…I think that is a BRAVE statement to make and everyone will have to do what is best for them. It’s real hard not having help and I can attest to that one. Especially when your child is constantly hyper fixated on things that are dangerous and you are mentally and physically worn out. I agree with her…at one time I wanted more kids but it will financially cripple me and wear me out as a parent. If I’m not healthy for my kids, then I can’t do what is best. I have one on the spectrum and one is not. It’s too much to gamble and mostly b/c of the fights I’ve gone through with daycare (everyone wants to toss him out due to high energy levels), the money I pay for therapy that insurance will not cover and the fact I will never be able to have lamps in my house for fear of the danger of him breaking the glass light bulbs…many more reasons and as beautiful and precious as he is, his issues are not the same as having a nerotypical child. I love my son to where I’ve given up most everything for him and to consistently work for him to have a happy life. But I refuse to risk going through this again. Every person’s journey is different. If someone can handle it and wants more kids then GO FOR IT but don’t you dare judge a person for NOT wanting to take the risk!!!

I agree with what you’ve written and I’m in the same boat with no support.

Something that this writer didn’t take into account are the neuro-typical siblings of children with Autism/Asperger’s (and if not neuro-typical then much, much, much lower [or would that be higher] on the spectrum).

It’s hard to “behold the joy” and appreciate the “extra package” when my other child is suffering.

Even if I weren’t hesitant at having another because of the fear that he or she would have an ASD, I would be hesitant because my so-close-to-being-NT-that-she’ll-never-be-diagnosed-but-just-enough-bad-off-that-it-does-affect-her-life daughter (2 1/2 years older than my son; my son is the one with Asperger’s) had/has it rough because of it all.

There are some who will say that it helps build character and maybe it does but still, my daughter has been on the back burner all of her life. She’s a straight-A student, very artistic, and she was one of the lucky ones to go in the positive (almost cured if you will) direction.

But she still gets put on the back burner for her brother and it still hurts her.

How many of us can’t afford to send our neuro-typical children to college because we spend so much on the various needs of our child with Autism/Asperger’s?

How many of us have had to “put on hold” our neuro-typical child(ren), or much-better-on-the-spectrum child(ren), because our child with Autism/Asperger’s was having a melt down?

And so on…

It’s not just our children with Autism/Asperger’s, and us their parents, that suffer (and yes Ms. Wagner we do suffer). Our NT children (sibling(s) of child(ren) with Autism/Asperger’s) have just as difficult if not a more difficult life than the rest of us.

Just my two cents… :)

Megan

February 20, 2012 at 3:33 pm

Diane,

I can appreciate what you are saying. I have a six year old “NT” son and two ASD sons who are four and three. I admit I do worry at times that my “NT” son does not receive the attention that he may need due to his two brother’s having extra needs. However, we as parent’s take extra effort into designing “one on one” time with our oldest as well as our two youngest.

I come from a family of four siblings and my husband comes from a family of six siblings. My husband and I grew up “being put on the back burner” on many occasions. It is all a part of being a family and looking out for eachother.

What I would suggest to you would be to instill in your daughter the patience, positivity and compassion that you have had to find in yourself being a parent of a child with ASD. As parents of children with ASD we MUST embrace these amazing children and what they have to offer…if we don’t…how can we expect society to understand and see the positive in them. I am not saying that we don’t have our challenges…we all do..I am just saying that a positive attitude is the most important thing in life…no matter what “cards you have been dealt.”

I totally know what you mean. So many people don’t get it. Bless your heart that you have two to raise. I’m dealing with one and don’t really have any family support either. My husband and I are pretty much handling it alone. The stress is unbearable, the worry (how will he survive after we’re gone), the guilt (of wishing life was easier…because the only way it would be easier would be if you didn’t have a child with autism…and that would mean not having YOUR CHILD.)

Don’t let anyone put you down for expressing your feelings. You have a right to feel this way. And it doesn’t mean you don’t love and appreciate your kids. You do!

I do love my child and all his sweet qualities whether they come from autism or not. But sometimes, I still wonder what could have been…what if he didn’t have autism…what would our lives be like.

When I feel that way, I usually read “Welcome to Holland” If you have never read it, you should…I always want to cry at the part about how the pain will never go away. It’s so true. But in the end, we somehow overcome the pain and find the joy again.

@alli – I agree with you 100%. As much as I love my son, I can’t have any more. I’m too worn down. I have one that is NT and one on the spectrum with hyper fixations, adhd..all kinds of stuff that are very difficult to deal with day to day. I need some peace to look forward to. It doesn’t mean that I don’t love him..it means I’m tired. I work constantly to make his life better. It’s arrogant and self righteous of anyone to attempt a blanket statement. Very much agree.

Hi. My name is Sharon Fialco. I am the author/publisher of the children’s “Starabella” audio/picture book series based on the childhood music and experiences of my daughter Tara. Tara is a self-taught pianist and composer who deals with autism. Tara used her piano to create a musical world of empathy and acceptance. She and her younger sister Dana, a talented singer have always come together through their music. They collaborated combining their talents to create the “Starabella” series which emphasizes the benefits of inclusion and social sensitivity. Tara has been an inspiration to our family through her spirit of determination and her belief in the potential of the human spirit. She has set a wonderful example for her sister and helped shape her sense of what is truly valuable in a person’s character. Dana has expressed her admiration for her sister in an article entitled: “Five Benefits of Growing Up With an Autistic Sibling.” For anyone wanting to read her article or share it with their children, it can be found as a blog on our website: http://www.starabella.com. We have always been so proud of both of our daughters and what they have brought into our family and into this world.

Great article! I wish things were easier for my ASD daughter, but I never, ever wish she wasn’t born. And I know I’ll feel the same when her younger sibling is born, ASD or not. For anyone who is pregnant or planning on becoming pregnant who already has a child diagnosed with an autism disorder, if you live in Northern California, Maryland, or Pennsylvania, you might be able to participate in a research study. No meds or anything–you just answer some questionnaires etc and your new baby gets free autism screenings till age 3. See link below http://www.earlistudy.org/Participation/17/

4 out of 5 are boys – I doubt those stats are very reliable, given the number of undiagnosed girls that almost ‘get by’ in life and are therefore at higher risk of anxiety and depression (like I did) . I found this article a bit dismissive in its ‘optimism’.

I was advised to have one child (if any) because of my battle with depression. My greatest fear was that our child would suffer depression (a life-threatening condition).

His diagnosis is how I found out about my own AS. Would never have known otherwise – us girls are good actors trying to keep up appearances – exhausting.

My boy is quirky and unique and is also very challenging to parent. We have our hands full with just one thankyou.

I find it ridiculous to describe a totally fictional family on tv as “strong”. I get the blogger’s sentiment but would find it more compelling and meaningful without the glorification of a fictional family created by a group of script writers.

I thought it was an honest portrayal of a family with a child on the spectrum. We have friends who just gave birth to a daughter. Their older son has ASD. It was like a weight off of their shoulders.
Heck, I am to the point whenever, I hear of anyone having a son, I silently hold my breath.
We have 2 sons. One with ASD and one without. We had planned on having a 3rd child, but since the ASD diagnosis, we will not risk it. I think the author is rather patronizing of parents who deal with autism as their life and not just their profession. I would love to leave autism at the door at 5pm. B

My oldest some is on the spectrum I found out when I was 4 months pregnte with twins boys who are not. I am very thankful for all 3 of my boys but would not have had more if I had known. I too would trade everything for my son. He is sweet and caring, but I watch his peers pass him up. He wants friends but is unsure on how to go about it. This show gives a unrealistic view,

I have to disagree that the idea that probablity having another child with autism is soley due to parental inheritance. Genetics alone cannot account for the increase. If this were the case autism numbers would be decreasing not increasing. There’s much more to the story. What should be looked at is common environmental exposures among siblings.

Where does the family but their groceries? What medicines does the family take? Where were those medicines made (country of origin)? I believe that while genes may play a supporting role, is not the primary reason autism is showing up among siblings.

Look at potential toxic exposures. We could be dealing with a neuro toxin.

Having 2 children with autism must be challenging to say the least. My older son is on the spectrum and non verbal, plenty of sensory issues etc etc but my younger son has no signs of autism so far (he’s 18 months) and I have one child on the way (due in March) I definitely have that fear that this child may be on the spectrum as well. But it’s important to remember being ‘functional’ or neuro typical doesn’t automatically make you a happy person in life. Children can grow up ‘normal’ and still end up committing suicide or being on drugs or who knows what…being normal doesnt mean that you won’t experience pain in life. Instead of wishing my son was ‘normal’ or comparing him to other children I just focus on his strengths and do what I can to help him reach his full potential.

What bothered me more about that show was during her Baby Shower Christina had the nerve to drink a glass of champagne. Any amount of alcohol is NOT to consumed during pregnancy. Are they now ready to raise a child with Fetal Alcohol? The disability that no one wants to talk about and you don’t get any services at school because it’s taboo!

Wow — maybe they should do an episode about the prevalence of boys to girls with the diagnosis? Could it be because TESTOSTERONE binds with the MERCURY/THIMERASOL in childhood vaccines instead of being excreted/detoxed by these boys with autism???? Autism shares many of the same characteristics of mercury poisoning. Several ways to receive exposure in the womb — through dental amalgams (made of 50% mercury, maternal rubella innoculations and flu vaccinations during pregnancy, etc.).

As a mom of a 12-year-old son with Asperger’s, I found their comments almost insulting on the show. My son, with all of his quirks, is and has always been a huge blessing. I know more about cars than I could have (or would have) learned on my own. He was not diagnosed until he was 8, and by that time I had 2 more children, a neurotypical boy and girl. As quirky and downright difficult as he could be as a young child, I never thought it would be a burden to have another one like him. It honestly never entered my mind. Having an Aspie is NOT the bad thing I think this family portrayed on the show.

I too am a mother of an ASD boy and am expecting another boy (our little surprise to say the least) in about a week or so. We are super excited to have another child, but there is an underlying concern on a repeat diagnosis. We didn’t expect to have another, as our hands were pretty full.
I think it’s important to remember that those of us caretaking for ASD children need to support one another and refrain from harsh judgement about personal choices. We are already fighting an uphill battle without having to alienate one another more. No one understands more what parents and caretakers of ASD children go through on a daily basis than another parent/caretaker of an ASD child. Even if our stories are not exactly the same.
There is so much we don’t know yet. And choosing to have a child, neurotypical or not, is an extremely personal one. The days we see progress in our children may be few and far between at times, but remember to stay the course, keep your chin up in the trenches and know that you are the link for your child to this world that moves so swiftly around them. They can make progress, there is light at the end of the tunnel-and it’s not always another train…most of the time. You are only human and we all have our moments. Just know you are not alone.